Warning -- 'Long' -- Lousy, miserable, degrading MS.:(
 

Soooo.......Seems like I've been feeling quite miserable for some time now....Yes, I'm still taking LDN. Every day it's becoming harder to find a reason to join the human race. (If anyone has any helpful suggestions about any of these complaints, feel free to fire away. I'd like some kind of resolution to them if possible.)

First of all....bladder issues. I'm taking the extended release form of oxybutynin and it doesn't seem to be working. By the time I realize I have to "go", it's too late. When sleeping, forget it. Getting out of my recliner, my bed these days, into my powerchair, getting out of the powerchair, sliding my feet backwards to the 'throne', (my legs won't move forward at all), takes forever so why bother?? This problem has taken over my life, afraid to go anywhere. Does anyone know anything about the supra-pubic catheters that are implanted directly into the bladder? It sounds awful, but I'm at that desperate point.

Then there's the debilitating nerve pain 24/7. I've had pain in the 'buttocks' for over 13 years due to the sciatic nerve. Every doctor has simply brushed it off as nothing. The spasms in various parts of my body are excruciating. It feels like every nerve ending is on fire and so far, I haven't found any pain meds that touch it. Medical mj isn't legal here in Pennsylvania, but I'd sure try it if it was.

Then the leg spasms and overall stiffness. OWIE!!! It takes forever just getting my feet up on the footrest of my powerchair since the legs won't bend like normal legs do until the spasms subside. Every time I move the slightest muscle anywhere, the total body spasms begin. Tizanidine (Zanaflex) isn't doing much to help.

Fatigue has been bad also, but if I try to go to sleep at a "normal" time, I can't sleep. A couple times I've had a glass of milk before going to sleep in the recliner, and I wake up with the glass and milk in my lap. Same with trying to read, watch TV, etc.....I fall asleep without realizing. Good thing I no longer drive!

As most of you know, I live alone with my little dog, Tasha -- a Bichon Frise, so the usual daily chores are my responsibility. I eat one meal a day plus snacks, have to stand up/sit down many times working in the kitchen, hanging on for dear life with one hand, trying to reach with the other. With more pain, it's getting harder to stand plus my balance is completely shot. My balance center was destroyed early on. My friends are here one day a week to clean, grocery shop, pick of prescriptions, take Tasha to the groomer, etc. It's getting really difficult and frustrating trying to do all these things.:(

I thought I had a handle on this lousy disease, but as time has gone by, I find myself becoming angry at it, crying hysterically from frustration and questioning my existence. What in the world could the purpose of this be? It doesn't seem to me the Lord wants me to waste these 'so-called' golden years. Guess I've hit one of the walls that appear every so often. I don't mean this as a 'poor me' whine, even though it sounds like one, just venting to those who understand. Nobody around here understands (family) and at the moment, don't even have a neuro since mine retired. There's an extreme shortage in this area. I just can't stand living like this........I HATE THIS DISEASE!!!!

i'm sorry youre having such a hard time with this, Judy. I wish there was somethign i could tell you to make it a little better. One thing I tell myself when i start thinking "why me" is that i'd rather it be me than say, one of my neices or nephews, or my brother the runner. i know that may not help, but try to find at least one thing you are happy for, then another, then another, and pretty soon you may find the resolve to keep keepin on.

i wish the best for you and hope you can get some help, it seems like you could use an assistant or caregiver to help with day to day living.

as far as the legality of marijuana, if you aren't getting relief from the medications you are prescribed, i don't see a problem with getting what you need to ease your pain, legal or not!

take care and know that we understand what you are going through, pain-wise, family-wise, and spiritually-wise! :hug: :grouphug:

I wish I had some good advice for you. I can (and will) pray for you, and for some more folks to come along with some suggestions. It sounds like you have a support system of friends, which is wonderful...can they come more often? Can you get some other kind of home health care? Do you have a church family that could assist? I think many times people would help but they don't realize there is a need.

First, hugs :hug: ok take another one :hug:


Do you qualify for meals on wheels? They drop off food to your home. Do you qualify for a home health aide? they come to your home to help you do basic daily living things like...dishes, or vacuuming, or shopping and washing up your own body, laundry and the like. Its wonderful to have friends, but it would be better to have your friends over to watch a movie or a cup of tea (even if they have to make their own) than mopping a floor. It sounds like you more than qualify for this assistance.

Many folks have had the supra pubic catheter and while you may view it as a defeat, I hope you will switch your prespective to one of freedom. It would give you the peace of mind that you are not going to wet your pants before you can make it to the potty. You could get off the meds.

The life that you are leading is not a fun life, and needs a tweak. PLEASE go visit your MD and re-explain to him that you are having many troubles, and ask HIM to sign you up for the services thru social care programs. His office will have much more knowledge about what and where they are. its easier than chasing them down yourself. If he is not listening to you, or dismissing you then...dismiss him! Go to an MS clinic and get proper help instead of dealing with someone who foo foos your symptoms (sx) and diagnosis (dx) While some prescriptions (rx) can help with spastic issues and bladder issues some will be much less effective without physical therapy (PT) or occupational therapy (OT) Even if you have someone come in to massage you, or use a vibrator massage unit to help loosen your muscles.

From what I see, you need two things. #1 you need HELP! please petition your MD for it. You need hands on help such as house work help, meal help and daily living need help, and help to get to and fro. #2 you need some mental help. Depression and frustration are a common companion of MS patients. You should not have to live like this. Even if you use a support group for cheerleaders, or a therapist for help to see the brighter side, lets say to help you see that supra pubic cath as freedom instead of a defeat.

Come back often and spill your guts. the rest of us do. We kick, scream, have bad days and then come back and share celebrations. Trust me, we get it. :hug:

:hug: Judy :hug: I so wish I lived close to you.....I'd help! Not sure how much actual "help" I'd be but we could both have fun watching me try! :o

Please look into getting some in-home assistance. You'd probably qualify for a couple of hours of daily assistance.....maybe cooking, cleaning, daily hygiene help. Doesn't Medicare cover this? I need to study my Medicare booklet that I just got in the mail since I am now on this coverage.

I'm sorry life seems so difficult right now. I can totally understand your frustration with it all. I'm praying for you, too. :hug:

:circlelove: ((((((Judy))))) :circlelove:

Please ignore my "Another Sunday" thread. Compared to your situation, that was sorta lame coming from me.

Even though, in many ways, we are in the same boat, I do not have constant pain and that is a BIG difference.:(

I am continuing my daily prayers for you and adding..."Please Dear Lord, give us a little more strength" Just a little more.

I've heard that there is a non narchotic pain patch, thats very good. I can't remember the name of it. hope it's something that would help you, without knocking you out.

Love, Sally

hi judy,

i'm judy too.
i really feel for you. please accept a big hug.

i agree with dej. it sounds like you need a good primary care dr and a good MS dr. could you call your local MS society (1-800-FIGHT MS). they could give you some names of drs or refer you to aid organizations like dej was mentioning.

some meds don't work for everyone. and after a while some meds just don't work as well. i've had to change several times til i found one that works for me. that's where a good dr comes in.

i also found a good pain medicine dr thru a local rehab center. i had a lot of leg pain also and my dr did a rhizotomy which helped with the nerve pain.

i sincerely hope you can find 1 good dr who will advocate for you and with you. please try the MS society. and, keep in touch. i'd like to know how you're doing. even if you just want to complain, vent and whine. we've all been there.

here's another hug, :hug:
judy

A healthy person would feel lousy without the proper nutrition and rest. MS aside, try to insure you are getting the nourishment and rest you need. Then there is is the issue of the MS.............best to you

Thank you everyone!! I know you're always there to "talk" with and give good advice and support. Yes, you're all correct in suggesting I could use some in-home help. My daughter has mentioned it a few times too, but that's just another thing to get my "head around". With so many things being taken away, I've found adjusting to one at a time is the best for me. Too many all at once is overwhelming.

I do think the first would be personal help (friends are great, but not for that) and help with meals. The friends I mentioned before are actually the two sisters around my age, that do cleaning, errands, etc, for me. Over the years, they've turned into really good friends. They work for other people too, so their time is limited.

There isn't a church family to help. Seems like I've had really bad luck with that. I was the choir director, played piano/organ in two churches for ten years, my "ex" and I were youth group leaders (teenagers), etc. When he and I separated, 21 years ago, my "so-called" friends and the powers that be, turned their backs on me even though there were no other people involved. I then went to the second church where people were very inviting. Then the MS got worse, most of the congregation were older folks and the whole church eventually folded and the building sold. Guess that's partly why I wonder what God's plan is for me having this. After all those years of serving Him......WHY?

Sorry, didn't mean to get carried away. As to the doctor situation, there are no MS clinics or specialists near here. The closest is Philadelpia which is a 3-1/2 hour drive. The neuro I had who retired, was the best for MS. Hopefully a new one or two will be brought in. I have spoken with an occupational therapist who was very helpful. Maybe she would have some suggestions.

Perhaps some PT too. My legs, feet and ankles are swollen all the time from lymph collecting there from immobility. 'Water pills' don't help that. Need to see my GP and someone to give me info on a s-p catheter. Reminds me of my mother who had a colostomy with rectal cancer.:(

Thanks so much for all your good thoughts, prayers and hugs. Nothing can take the place of that personal touch.:)

Hi Judy - If you are on Medicare please see if you can find a caseworker. Mine arranged all the home care agency and self direct Personal assistants, financial payees to help with bill paying, hospital/medical etc, medication mgmt, scheduling of doctor visits and exams, and sees to it that I am receiving the proper care and respect I deserve (a great advocate), I love my therapist who greatly encourages me, psych for occassional depression with the fatigue, and now she has gotten my present neuro to back off my case and has me arranged to see specialists in MG and MS at univ hospital. Check out doctors bio online yourself. My trip to specialists will be a 3 1/2 trip each way too and I just found out yesterday that Medicare will arrange the lodging I need for 2 nites with meals plus the transportation of getting me there and back and a shuttle bus from motel!!! I did not know they would do that! Apparently if your doctor is more than 100 miles from your home and your doctor can explain why it is necessary for you to travel that far to see a doctor (like going to Mayo etc) Medicare will pay for travel, lodging and meals!!! They make all the arrangements (as you need) so I just told them to arrange everything (like a travel arranger) and they will be getting back in touch in a day or so. So dont let a few miles get in your way of getting help. And, as my caseworker kept telling me-I have the right to GO anywhere I need to get the help I need. Its out there folks-just get on the phone and find the right resources. I think calling a state agency would be my first line of action as they can best tell you what;s out there and avail for you from your own state. They even pay for the Personal assistant to travel with you so you dont have to do it on your own. Good luck and I hope God's blessings start to flow upon your sweet lap of exhaustion. I will admit I admire you and am almost ashamed of my own "whinings" as I dont have the pain on top of everything else and with the fatigue I dont know how I could tolerate daily constant pain. The urologist I saw the other day-excellent one- told me to try and go for as long as posssible before resorting to using catheters as the various catheters can increase UTI's. I know many use self catheterization and like this method. I simply keep myself on a 3-4 hour urination regimen and if I have a leakage it is rather small and manageable with pads. I have total loss of sensation and know what you mean but the 3 hour regimen has so far kept me from being seriously embarrassed as I am home most of days anyway. So, when I go for the doggie walks, I have to take the Mestinon 30 mins before walk (for MG) then potty, put on thick pad and go for nice long walk. Last year I went to PT and it made a dramatic change in my physical limitations, then I got the dog and began serious regimen of daily walking and I am so MIRACULOUSLY better!! I can hardly believe the imporvements-I was forever falling backwards as I tried to walk forward, muscles were hurting and spasming and aching etc. I believe in Montel Williams when he would constantly say-you MUST excersise to keep the beast at bay! It has even diminished the total collapses I would have with a flare up-at least this time go around. Much less severe fatigue-feet are back to barely lifting off ground and are sluffling along but I truly feel less debilitating fatigue. Keep moving but GET help for meals, housecleaning, shopping, errands etc. Stress plays a big factor in this disease and all these things will greatly help reduce your stress and fatigue. Rest is so essential to lessen severity of the muscular pain and fatigue. Let us know if you find your resources or Ill get online and phone and try to find them for you. Best of luck.